Abstract Details
9/09/2025 | 1:00 PM - 1:30 PM | Thomas H. Swain
Wisconsin CMV Family Focus Survey
Abstract Summary
The purpose of this focus group research is to gather in-depth insights from Wisconsin families whose children have been diagnosed with congenital Cytomegalovirus (cCMV). Through an email survey and series of structured interviews, the focus group will explore these families’ personal experiences, particularly their journey from diagnosis to navigating the challenges of cCMV, which may include hearing loss and other severe medical conditions. This session will review the tools to gather family lived experiences the results of the survey to cover the following aspects of the structured interview. IRB Survey: Discuss Wisconsin Family Focus Survey Questions Diagnosis Experience: How families first learned of the cCMV diagnosis, including the method and timing of communication from healthcare providers. What Educational Support: Understanding the resources and support available to family's post-diagnosis, particularly in educational settings, and how this support has affected their child’s development. Early Intervention: Exploring the steps taken to address potential hearing loss and other medical complications associated with cCMV, with an emphasis on the effectiveness and accessibility of early intervention programs. Future Steps: Investigating what families perceive as the next steps in managing their child’s condition and their need for further education and guidance. This research will contribute vital evidence to help bridge existing gaps in medical education regarding cCMV. The findings will inform the development of improved protocols for healthcare providers, ensuring that families affected by cCMV have access to comprehensive information and resources. Moreover, this study will highlight the need for accessible information on cCMV and its potential impact, guiding future efforts to better support affected families and prevent misunderstandings about the virus and its long-term effects on children’s health. By giving voice to the experiences of these families, the research aims to create a more informed, responsive, and supportive healthcare environment for Wisconsin families impacted by cCMV.
Learning Objectives
- Improving care for Wisconsin Families with cCMV.
- Understanding the cCMV Education Efforts.
- Creating cCMV Screening Practices and Policies
Presentation
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Handouts
Presenters
Pamela Hollar | Primary Presenter
pamelajinsky@gmail.com;
Pamela Hollar lives in Marshfield, Wisconsin, where she is raising her three children: August (13), Oliver (12), and Pella (10). Her journey into advocacy began when Pella was diagnosed with congenital Cytomegalovirus (cCMV) at 16 months old. Experiencing firsthand the challenges and gaps in awareness around cCMV, Pamela committed herself to ensuring that other families would not face the same “epic cCMV fail” she encountered with medical staff.
She now serves as a Family Lived Experience Advocate with the cCMV WiSPER Project and is the Wisconsin Alliance Community Chair with the National CMV Foundation. Pamela is also a graduate of the Wisconsin Family Leadership Institute, where she continues her work as a special needs parent advocate.
Deeply rooted in her community, Pamela volunteers with the Marshfield Elk’s Lodge #665 Fundraising Committee and has served as Head Cheerleading Coach for the Auburndale Area Youth Football & Cheer Association since 2022.
Professionally, Pamela is a Sales Consultant with Imperial Dade, where she began in 2024.
Through both her career and volunteer work, Pamela brings a unique perspective that combines professional experience, leadership, and lived advocacy for children and families impacted by special needs.
ASHA DISCLOSURE
Financial - No relevant financial relationship exists.
Nonfinancial - No relevant nonfinancial relationship exists.
AAA DISCLOSURE
Financial -
Julie Kessel | Co-Presenter
jmkessel@pediatrics.wisc.edu;
Dr. Julie Kessel is associate professor (CHS) in the Division of Neonatology and Newborn Nursery.
ASHA DISCLOSURE
Financial -
Nonfinancial -
AAA DISCLOSURE
Financial - No relevant financial relationship exists.
Elizabeth Goetz | Co-Presenter
egoetz@wisc.edu;
Dr. Goetz is a Newborn Nursery Hospitalist at the University of Wisconsin Madison. Dr. Goetz completed pediatric residency at the University of Wisconsin Madison after attending medical school at the University of Minnesota.
ASHA DISCLOSURE
Financial - No relevant financial relationship exists.
Nonfinancial - No relevant nonfinancial relationship exists.
AAA DISCLOSURE
Financial - Receives support from Wisconsin Department of Health Services for Grant funding.